Lots of people this afternoon

Big thing of the day was that from 3:00 to 6:00 it was crazy here with lots of people.

First was Paul from Apria (RT) here to do vent checks on the boys' Trilogys and to check serial numbers of equipment.  I kind of think that somehow we are losing out on some equipment that was probably 'patient purchased' as we had rented it to own, but then Apria swapped it out and we never got to keep it.  For instance, in the paperwork Paul had it said we had purchase 3 suction machines over the years and we only have ONE that they told us was purchased.  There are pros and cons of purchasing equipment anyway, but still.  We do own all of our old blue cough assists, so that's a good thing.  We're only renting the 'new' style cough assist under Colin's name.  With the new insurance, I'm going to get one for Casey.  I hope they don't buck it but we'll see.

While Paul was here a tech from The Medical Store came to fix Casey's power chair.  The chair worked with the attendant control but he couldn't drive it.  Turns out it was the controller thingy that went bad.  It's partially fixed--Casey can drive it, but it still flashes the error until they get us a new cable.  Sigh.

And, while they were both still here, Deb from Biomedics came.  She was here for at least two hours.  She looked at Colin's AFOs, his night time leg braces, and his belly brace.  She added a strap that will help keep Colin's foot in place in his AFOs and added a padding here and there.  She glued the inside foam to Colin's night time braces so they be easier to put on.  She declared that Colin has grown quite a bit since he got his belly brace (TLSO) in March/April of 2013.  His torso had grown about 3 inches!!  So, she'll be putting in a pre-authorization for that.  We MAY try a two piece clam shell instead of the one piece.  I'm collecting some info and pics to show her of how some other families have had them made.  She's fine with it although she says it is bulkier on the sides so I'm still looking at options. 

Deb looked at Casey's AFOs and stretched them out and we used some soup cans to keep them stretched while they cooled.  She flared out a couple of spots on Casey's night time braces.  She reshaped Casey's left hand splint to make it fit better and for his thumb to stay better in place.  So those were all good things to get done.  She is a great orthotist!

Making progress on Colin's new chair and a fun package

Casey was off today in a good mood. He ended up doing okay. He had some time outs in the hallway but he spent some time in class, phew! Things are still new and I know he likes to have things more concrete and settled than they are right now, but Mel is working hard to nail down his schedule and routine!

Colin, well, he had a stinky morning. Lots of complaining and not listening very well. He got lots of strikes and outs. I'll have to go and count). He made 10 cents for one good listening period.

Colin did better this afternoon and made a quarter :) The TV had some issues. I guess the drops in his other classrooms (his homeroom/main class is fine) aren't working.

Spent 2 and a half hours with the "chair" people. Missy, (The Medical Store), Paul (seating for Children with Special Health Needs) and our rep from Invacare were here. THANK YOU SO MUCH, Nikki, Heather and Sandy for sharing pics of your kids in the Solara/Spree chairs and paving the way to getting Colin a wheelchair that he can be comfortable in and meet his needs! It's so nice not to have to start totally from scratch! I had pictures of 4 kids that Missy printed out so that we could see what parts/accessories/modifications that they made so that the kids can lay flatter (like our Easy S medical stroller) and have room for equipment and to have a functional push handle, etc. The rep was very impressed and excited to see what others have done.

Jaxon was a super pain in the butt while we were trying to get this all done. Luckily, all three of the "chair" people like dogs so they dealt okay with him hopping all over us and 'snuffling' their hair and bringing them his toys and barking when I finally put him in his crate, sigh. Julia even tried to bring him out but he was so hyper and wild that she couldn't get him to stop gnawing on the leash!

Today we received our package from Busy Bee Sewing for SMA (Peggy McBee). Peggy makes some beautifully sewn things and profits go to SMA research. I ordered 3 covers for oxygen tanks; 2 'E' tanks and an 'M' tank. They look great! I wanted something for older boys and since we're re-doing Casey's room in flames, I asked if she could use flame material...Here's Casey with a pillow case that she added to our order!

And, here's one of the oxygen tank covers.

Check her out on Facebook...BusyBee Sewing for SMA or on Etsy

"100% of the proceeds from this shop will be donated to Sophia's Cure Foundation (http://www.sophiascure.org/) to help fund Gene Therapy Research for SMA."